DOI: 10.1542/peds.2013-4189; originally published online June 2, 2014; 2014;134;155Pediatrics

Jennifer deSante, Arthur Caplan, Benjamin Hippen, Giulano Testa and John D. LantosWas Sarah Murnaghan Treated Justly?

  

  http://pediatrics.aappublications.org/content/134/1/155.full.html

located on the World Wide Web at: The online version of this article, along with updated information and services, is

 

of Pediatrics. All rights reserved. Print ISSN: 0031-4005. Online ISSN: 1098-4275.Boulevard, Elk Grove Village, Illinois, 60007. Copyright © 2014 by the American Academy published, and trademarked by the American Academy of Pediatrics, 141 Northwest Pointpublication, it has been published continuously since 1948. PEDIATRICS is owned, PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly

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ETHICS ROUNDS

Was Sarah Murnaghan Treated Justly?

abstractLung transplantation is a potentially life-saving procedure for patientswith irreversible lung failure. Five-year survival rates after lung trans-plantation are .50% for children and young adults. But there are notenough lungs to save everyone who could benefit. In 2005, the UnitedNetwork for Organ Sharing developed a scoring system to prioritizepatients for transplantation. That system considered transplant ur-gency as well as time on the waiting list and the likelihood that thepatient would benefit from the transplant. At the time, there were sofew pediatric lung transplants that the data that were used to developthe Lung Allocation Score were inadequate to analyze and prioritizechildren, so they were left out of the Lung Allocation Score system. In2013, the family of a 10-year-old challenged this system, claiming thatit was unjust to children. In the article, we asked experts in healthpolicy, bioethics, and transplantation to discuss the issues in theMurnaghan case. Pediatrics 2014;134:155–162

AUTHORS: Jennifer deSante, MD, MBE,a Arthur Caplan,PhD,b Benjamin Hippen, MD, FASN,c Giulano Testa, MD,MBA,d and John D. Lantos, MDaChildren’s Hospital of Philadelphia, Philadelphia, Pennsylvania;bDivision of Medical Ethics, NYU Langone Medical Center, NewYork, New York; cCarolinas Medical Center, Charlotte, NorthCarolina; dLiving Donor Liver Transplantation, Baylor UniversityMedical Center, Dallas, Texas; and eChildren’s Mercy Hospital,Kansas City, Missouri

KEY WORDSchild, ethics, cystic fibrosis, lung transplantation, resourceallocation, justice

ABBREVIATIONSLAS—Lung Allocation ScoreOPTN—Organ Procurement and Transplantation NetworkTRO—Temporary Restraining OrderUNOS—United Network for Organ Sharing

Drs deSante and Caplan had the original idea for this paper andhelped conceptualize the paper; Drs Hippen and Lantos helpedconceptualize the project; Dr Testa helped to analyze thefundamental issues in organ allocation; and all authorscontributed to the manuscript and reviewed and approved thefinal manuscript.

www.pediatrics.org/cgi/doi/10.1542/peds.2013-4189

doi:10.1542/peds.2013-4189

Accepted for publication Mar 13, 2014

Address correspondence to John D. Lantos, MD, Children’s MercyHospital, 2401 Gillham Rd, Kansas City, MO 64108. E-mail:jlantos@cmh.edu

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2014 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they haveno financial relationships relevant to this article to disclose.

FUNDING: No external funding.

POTENTIAL CONFLICT OF INTEREST: The authors have indicatedthey have no potential conflicts of interest to disclose.

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Lung transplantation is a potentiallylife-saving procedure for patients withirreversible lung failure. Five-year sur-vival rates after lung transplantationare more than 50% for children andyoung adults, but there are not enoughlungs to save everyone who couldbenefit. In 2005, the United Network forOrgan Sharing (UNOS) developed ascoring system to prioritize patients fortransplantation. That system consid-ered both transplant urgency aswell astime on the waiting list and the likeli-hood that the patient would benefitfrom the transplant. At the time, therewere so few pediatric lung transplantsthat the data that were used to developthe Lung Allocation Score (LAS) wereinadequate to analyze and prioritizechildren, so they were left out of the LASsystem. In 2013, the family of a 10-year-old challenged this system, claimingthat it was unjust to children. In thearticle, we asked experts in healthpolicy, bioethics, and transplantation todiscuss the issues in the Murnaghancase. Our discussants are JenniferdeSante, MD, a postdoctoral fellow inthe Department of Bioethics at theClinical Research Center of the NationalInstitutes of Health; Arthur Caplan, PhD,the director of the Division of MedicalEthics at the NYU Langone MedicalCenter; Benjamin Hippen, MD, a trans-plant nephrologist in private practice atthe Carolinas Medical Center; andGiuliano Testa, surgical director of Liv-ing Donor Liver Transplantation atBaylor University Medical Center.

THE CASE

In the spring of 2013, the case of a10-year-old girl awaiting a lung trans-plant became the center of an un-precedented controversy over fairnessin the distribution of lungs from ca-daver donors.1

Sarah Murnaghan was born with cys-tic fibrosis. At the age of 1 she beganreceiving her care at the Children’sHospital of Philadelphia. In December,

2011, her disease had progressed tothe point where she was place on thenational transplant waiting list withpriority status 1, a status reserved forthe patients who most urgently needa transplant. By December 2012, shewas on continuous, noninvasive re-spiratory support at home. In February2013, she was admitted to Children’sHospital of Philadelphia because of herworsening respiratory status. Despitemaximal therapy, her lungs began tofail. During her year-plus time on thewaiting list for a lung transplant, noorgan deemed suitable by her trans-plant team had become available.

With no acceptable donor lungs avail-able, her parents told members of themedia that they had only recentlylearned that Sarah was not eligible toreceive adult cadaver lungs. AlthoughSarah had been listed for both wholelung and lobar transplant since 2011,given her age, she was not given a lungallocation score that would make hercompetitive in gaining access to adultlungs.

UNOS is charged by Congress withrationing cadaver organs, includinglungs.2 Adult lungs are distributedbased on a lung allocation score that isbased on need, regional location, bloodtype, and size. UNOS updated its pedi-atric lung policy in 2010, putting 2 tiersin place for children. Lungs recoveredfrom adolescents (age 12–17) wereoffered first to adolescent recipients,then to children ,12, then to adults.Lungs from children ,12 years oldwere first offered to children,12, thento adolescents, then adults.3 The basisfor this policy was that there were datathat predicted the efficacy of adultlungs in adult recipients, but few dataon the outcomes of partial lobar lungtransplants in children, especially inthose ,12.4–7 The known success ofadult lung transplantation was givenmoreweight than the unknown efficacyof partial lobe lung transplantation.

Sarah’s parents, in an attempt to givetheir daughter the best chance at life,launched a public relations campaignto get her priority access to lungs ob-tained from the adult cadaver donorlist. The publicity from this caseprompted a sympathetic responsefrom many members of Congress, whoasked Secretary of Health and HumanServices Kathleen Sebelius to overridethe restrictions on adult lungs forpatients ,12 years old. The Secretaryrefused to overturn the policy of UNOS.8

In response, Sarah’s family sought theskills of a prominent Philadelphia lawfirm and filed a lawsuit challengingUNOS policy.9

With Sarah critically ill, an emergencyhearing was held before Federal JudgeMichael Baylson. On June 5, 2013,Baylson ordered Secretary Sebelius toallow Sarah to be placed on the adultlung transplant list. This, it was felt,would increase her chances of gettinga lung for transplantation.

Did Judge Baylson make the right de-cision to override the UNOS allocationsystem in this case?

Comments by Dr Jennifer DeSanteand Professor Arthur Caplan

Until Sarah’s case, decisions on whogets cadaver organs for transplanta-tion were based on medically deter-mined and enforced rules.10 The UNOSsystem has, for decades, been a modelfor making tough rationing decisions.Sarah’s case challenges the idea thatdecisions about the distribution ofscarce health care resources can bemade based on objective criteria andnot emotional appeals, media cam-paigns, or lawsuits.

The UNOS pediatric lung policy wasdeveloped based on data frompreviouslung transplant surgeries, whichshowed that children ,12 would havethe best outcomes with organs fromdonors ,12 years old. Furthermore,the medical conditions of children,12

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are different enough from adults that itis difficult to calculate an accurateLAS.11 Cystic fibrosis, a common indi-cation for lung transplantation, pres-ents its own set of challenges forpediatric lung transplant recipients. In2011 in the United States, there werejust 19 lung transplants for children,18.12 There were .1700 transplantsfor patients 18 or older.

Lungs for pediatric transplantation arescarce. Of the.400 donors a year,12years old,,10% of them provide lungs,compared with .35% of the .400adolescent donors a year. The scarcityin donor lungs is not just because ofa lack of donors, but also the con-strictions of geography that pertain tolungs. Proximity to the recipient iscritical given the short ischemic timeof lungs. Therefore nearly 30% of lungsfrom donors,12 are transplanted intoadults. Organ scarcity also reflects thefact that some child lung transplantprograms are very conservative as tothe cadaver organs they will accept.

None of these facts was brought up inthe media debate surrounding Sarah’scase. Nor did the congressmen whoargued that it would be appropriate tooverride the UNOS allocation policyseem to be aware of them. AlthoughPennsylvania Congressman Lou Bar-letta noted that “with the stroke ofa pen [the Secretary] could havegranted Sarah a waiver” that wouldgive her a chance to live, he did notmention that Sarah at age 10 mightpush aside a child of 12 or 13.13 Nor didhe remark that the odds of success fora lung transplant in any recipient werepoor, with overall survival at 6 years,50%.14 Nor did he comment on theadditional surgical difficulties of a lo-bar lung transplant in a patient withsevere cystic fibrosis. All of these fac-tors shaped the UNOS pediatric lungallocation policy.

Never before had the UNOS organ al-location policy been successfully chal-

lenged in a single case. Although peoplehad engaged in publicity campaigns toacquire designated cadaver or livingorgans, never before had the govern-ment intervened to negate the medi-cally determined rules for rationing anorgan.

There is no denying the need to rationorgans for transplantation. The ques-tion is not whether there should berationing of scarce, life-saving resour-ces, but how the scarce resourcesshould be rationed. And as Sarah’s caseshows, there are actually 3 criticalquestions about the ethics of rationingin health care: Who do we want makingrationing decisions and on what basis?Do we want our health care resourcesdistributed by federal judges, mem-bers of Congress, or those who canmount media campaigns? If these arenot the proper allocators, then who is?

Rationing in health care should not bethe job of the government, lobbyingparents, attorneys, or public relationsfirms. They lack the required medicalknowledge to decide who can benefitfrom access to scarce resources or theability to create rulesbasedondataandoutcomes. Rationing is best left in thehands of those who can bring expertiseto bear to determine need and thecritical factors that shape successfultransplant outcomes.

Sarah’s parents had every right to ad-vocate for their child, including in-volving the media and taking legalaction. Sarah’s doctors were correct insupporting every realistic option forSarah’s care. Physicians have a fidu-ciary responsibility to their patients,which requires them to act in the bestinterest of every individual patient,even at the cost of denying resourcesto others.

When a physician is at a patient’s bed-side, the physician is advocating forwhat is best for that patient, regard-less of outside factors and limitations.But in transplantation, as in many

areas of health care, rationing deci-sions must be made. For almost 3 de-cades, Americans have allowed UNOStomake thesedecisions. In theMurnaghancase, Judge Baylson claimed that theUNOS pediatric lung allocation policywas “arbitrary,” capricious, and basedon inadequate evidence. If the UNOSlung policy had been arbitrary or ca-pricious or discriminatory, then itsurely would be appropriate to pursuea legal appeal on behalf of Sarah. But,ironically, the UNOS policy was driven bythe absence of adequate informationconcerning the efficacy of lobar lungtransplants that would justify givingchildren higher priority for adult lungs.What the judge saw as arbitrary, UNOSexperts saw as a policy reflective of theinadequate evidence concerning trans-plants for children versus adequateevidence supporting the efficacy ofadult lung transplants.

The intervention by the court in re-sponse to media and political lobbyingshould not be a precedent for whoshould decide or on what basis ra-tioning ought to proceed. The evidence-basedUNOSsystemhasdonea good jobof allocating scarce organs withoutfavor or politics for decades. SarahMurnaghan’s parents (and lawyers), indeciding to fight for Sarah’s chance atlife, threaten to topple one of the fewtransparent rationing schemes thathas secured public support. It may nowbe replaced by a system that privilegesthose who can command publicity andlegal firepower.

Rationing scarce resources fairly isdifficult. Evidence-based rules and ex-pert opinioncanbeoverwhelmedby theplight of a particular patient. Rationingprotocols need the law to protectagainst invidious discrimination. Theremay even be a case to give specialconsideration for children simply be-cause they are persons with unfinishedlives.15 But rationing, to be fair, alsoneeds to be sufficiently transparent

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and grounded in evidence-based rulesable to withstand the emotional tsu-nami that a dramatic case can create.

Comments by Dr Benjamin E.Hippen

Judge Baylson did the right thing. It isunfortunate that he had to.

In an editorial about this case, Halpernclaims that Judge Baylson’s decision“…exalted (Sarah Murnaghan) andanother child above a national pol-icy.”16 I disagree. To see why, it is nec-essary to examine exactly what JudgeBaylson did and did not do.

What he did was issue a 10-day tem-porary restraining order (TRO) againstthe Department of Health and HumanServices and their policy for organallocation. This was done so thatMurnaghan would not suffer mortalharmwhile the parties were compelledto assemble and state their cases foradjudication on the merits. In issuingthis order, Judge Baylson determinedthat (1) thedisputedpolicywas “arbitraryand capricious,” (2) that Murnaghanhad a high likelihood of prevailing onthe merits of her case, and (3) thatMurnaghan had the prospect of seriousharm in the absence of temporary relief.

This decision did not show favoritism toSarah Murnaghan. Instead, it ques-tioned the fairness and the scientificvalidity of the policy of the Departmentof Health andHumanServices for organallocation. It allowed her to have thesame chance, not a better chance, aseveryone else in the country to receivean organ. That was the right thing to do.

Fortunately for her, Murnaghan wastransplanted in the 10-day window of-fered by the TRO. Thereafter, the UNOS/Organ Procurement and Transplanta-tion Network (OPTN) Executive Com-mittee adopted an exception (with asunset provision in June 2014) to theirown lung allocation policy, Policy 3.7,which permits lung transplant candi-dates ,12 to apply for individual case

review for inclusion in the LAS for thepurpose of allocation. The exception toPolicy 3.7 provides for the opportunity,after individual peer review and ap-proval by a UNOS/OPTN subcommittee,for candidates ,12 to be grantedequal (not “exalted”) considerationalongside candidates .12 for organsfrom adolescent and adult donors.“Consideration” is not a euphemism,and the exception to Policy 3.7 is nota carte blanche. Approving or not ap-proving a ,12-year-old candidate forinclusion in the LAS based on specificclinical concerns, such as whether anindividual ,12 candidate’s thoracicmorphology is suitably similar toa .12 candidate for the purpose ofreceiving lungs from an adult donor, orwhether a particular individual ,12candidate is not a candidate for lungtransplantation by virtue of havinga particular underlying diagnosis orcombination of comorbidities thatmake success unlikely, is explicitly thepurview of a national committee ofexpert clinicians who are not directlyinvolved in any individual case. In otherwords, UNOS adopted Judge Baylson’sapproach.

The Murnaghan’s lawyer, Steven Harvey,argued that Murnaghan (and JavierAcosta) should have their cases as-sessed on a common metric of medicalurgency, a metric the LAS is designedto measure, without consideration ofage alone as an advantage or disad-vantage for allocation purposes. Heargued, “Murnaghan...asked only thatthey be given access to adult lungsbased on the medical urgency of [her]condition...they sought no specialpreference.”17 And, Murnaghan did notreceive special preference: she wasallocated organs by virtue of her highLAS, a score that is calculated in anidentical way for every other recipient.This is no more unfair than a scenarioin which another .12-year-old candi-date was rapidly evaluated and listed

with a high LAS at a given institution,thereby “bypassing” other candidates.It is true that Murnaghan was able tolist as Status I as well as being includedin the LAS, but this did not offer her anyadditional advantage relative to othercandidates. Status I listing is availableonly to candidates ,12,18 and organsare offered to Status I candidates onlyif the organ offer is turned down for alleligible candidates .12. Therefore,candidates.12 are not disadvantagedby candidates with dual listing.

Judge Baylson enforced a temporarycourse of action that, in retrospect, wasratified (and thereby mooted) by thepolicy exception adopted by the UNOS/OPTN Executive Committee 4 dayslater. For their troubles, Baylson andHarvey have been pilloried. The UNOS/OPTN Ethics Committee released ahigh-handed, condescendingstatementaverring, “Politicians and judges whointervene in a complex allocation al-gorithm may be well-intentioned butfail to consider all the moral variablesthat must be balanced at the macrolevel rather than through an individualcandidate’s experience.”19

Aside from the point that the Murnaghanfamily was explicitly not seeking anexception based on “an individual can-didate’s experience,” but instead theopportunity for candidates ,12 as aclass not to be excluded from LAS, theallusion to complexity and the need formacro-level balancing begs the ques-tion: Did the policy exception approvedby the UNOS/OPTN Executive Committeemeet the Ethics Committee’s proteanstandards of respect for “complexity”and “macro-level” balancing, or not?

Consider the counterfactual: But for thebrief filed on Murnaghan’s behalf andthe order issued by Baylson, it is ex-tremely unlikely that the ExecutiveCommittee would have considered,much less approved, the exception toPolicy 3.7. Did the Executive Committeereconsider the policy on the merits, or

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instead was the exception approvedmerely as an expedient stopgap toavoid the expense, attendant bad pub-licity, and uncertain consequences oflitigation? Critics of Judge Baylson andAttorney Harvey remain silent on thesepoints.

John Roberts, the then-president ofUNOS/OPTN, thought approval of thepolicy exception was not merely re-alpolitik. He told Bloomberg News, “Mysense is that that particular age maybe difficult to justify from a scientificpoint of view. The exception will allowus to re-examine the lung allocationpolicy considering the most recentdata.”20

What would lead someone to think theexisting data were insufficient to useage as a cutoff for inclusion in the LAS?Ironically, it is the same reason thatHalpern16 cites as the reason thatcandidates ,12 were not included instudies validating the LAS: there havehistorically been very few children,12 listed for lung transplantation.Halpern16 argues that “Applying [theLAS] model to children might thereforecause inequitable prioritization....”Maybe so, but here Halpern16 conflatesthe absence of evidence as evidence ofabsence as regards the applicability ofLAS to selected candidates ,12, whenthe appropriate attitude to this ques-tion is one of equipoise.

Furthermore, there were a total of only49 registered candidates ages 6 to 11listed for lung transplantation fromSeptember 2010 to March 2013, com-pared with 7323 candidates aged .18over the same period (Fig 1). Thecomparatively small number of candi-dates ,12 compared with the largernumber of candidates .12 (the cate-gory that sets the relative risk = 1.0)means that the confidence intervals(for a 95% confidence level) on anyrelative risk calculation for the 0 to 5and 6 to 11 subgroups will be broad, asthey are in Fig 2. To demonstrate “sig-

nificant” harm, the relative risk ofdeath and relative risk of not receivinga transplant would have to be of suffi-cient magnitude to overcome thesebroad confidence intervals, which isa nearly insurmountable standard ofproof.

In short, Roberts is correct that agecutoffs are difficult to justify froma scientific point of view. The policyexception approved by the UNOS/OPTNExecutive Committee does not dele-gate allocation decisions,much less thepractice of medicine, to judges or tothe legal representatives of telegenic

transplant candidates. Instead, it dele-gates them to a committee of qualifiedmedical and surgical peers to considercandidates on a case-by-case basis,taking all clinical factors (and not justage) into account, while concomitantlygenerating prospective data on a ques-tiononwhich there is clinical equipoise.Had this policy exception been extantpolicy at the outset, it is likely that nosuit would have been brought, and noTRO would have been necessary. That itwas justifiably necessary ought to beoccasion for circumspection, and notapprobation, on the part of transplant

FIGURE 1Number of lung registrationswith offers or acceptance by age, September 12, 2010 toMarch 11, 2013.Included lung registrations with or without any other organ(s). Age was determined based onmaximumof age at listing or age at start of period. From the OPTN/UNOS Steering CommitteeMeeting,June 10, 2013. http://optn.transplant.hrsa.gov/ContentDocuments/OPTN_Exec_Comm_mtng_materials_06-10-13.pdf

FIGURE 2Unadjusted relative risk of death/too sick and transplant by age group for lung alone candidates everwaiting during September 12, 2010 toMarch 11, 2013. Age was determined based onmaximum of age atlisting or age at start of period. From the OPTN/UNOS Steering Committee Meeting, June 10, 2013. http://optn.transplant.hrsa.gov/ContentDocuments/OPTN_Exec_Comm_mtng_materials_06-10-13.pdf

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policy professionals. Here, the fault isnot in our stars, but in ourselves.21

Comments by Dr Giuliano Testa

The case of Sarah Murnaghan is dra-matic and unfortunately not unusual.The child has a chronic pulmonarycondition that can be treated only witha transplant. She has to wait for a longtime for the therapy that ultimatelymayprolong her life.

According to data from the ScientificRegistry Transplant Recipients, therewere 1305 patients awaiting a lungtransplant in the United States in 2011.Of these, 36.5%had beenwaiting for.1year. The mortality rate while on thelung waiting list was 15.7% in 2011 andmany patients were taken off the listbecause, while waiting, they becametoo sick to survive a lung transplant.

Things were even worse for pediatricpatients. For those between 0 and 11years, thegroupSarahMurnaghanwasin,therewere 43 active patients in 2011. Only19 (44%) of these received a transplantand 13 (30%) died while on the waitinglist.22 Clearly, there are not enough lungsto transplant the patients in need.

In the conditionof scarce resources, themedical community established pre-cise rules with the aim of allocating thefew organs available to the patientsmost in need. These rules were estab-lished as a mandate of the federalgovernment through the report ofa Federal Task Force on Organ Trans-plantation instituted in 1984 for pro-posing policies for organ procurementand distribution.23 It states that thecommunity should have dispositionalauthority over donated organs, thatprofessionals should be viewed astrustees and stewards of donatedorgans, and that the public should beheavily involved in the formation ofpolicies of allocation and distribution.UNOS is the agency in charge of draftingrules and regulations of organ alloca-tion. They do this through a democratic

process that involves the distribution toall transplant centers of a proposal, anopen forum to comment on the pro-posal, a general vote, and ultimately thecodification of the proposal into a policy.

The lung allocation policy is as follows:pediatric patients,18 years of age aredivided into 2 groups, ,12 and .12years of age. Patients,12 years of ageare ranked by priority, based on re-spiratory failure and pulmonary hy-pertension, by geography (becauseischemia time dictates success aftertransplantation), by blood type, and bywaiting time on the list. Lungs fromdonors ages 0 to 11 years are first of-fered to a recipient of the same agegroup then to the others; recipients ofidentical blood type are given pre-cedence to recipients with compatibleblood type. Any transplant center canappeal to a regional review board,made up of transplant physicians of thesame region, and the review boardmayor may not grant the exception.24

The Murnaghan family appealed to ajudge to overrule UNOS regulations.They asked that Sarah be consideredfor lungs from adult donors with theaim of having access to a larger pool ofdonors. The judge granted the parents’request. Sarah Murnaghan was trans-planted with organs originally destinedto an older recipient. The first trans-plant failed and Murnaghan was re-transplanted shortly thereafter, thistime with a successful outcome.

The ethical principles that drive the al-location system are justice and utility.Justice dictates that treatments be al-locatedequallyandfairly; that is,patientsin similar clinical conditions should betreated in a similar manner and haveaccess to similar treatments. Utility is ofparamount importance because, ina situation of dire scarcity, treatmentsshould be allocated to those patientsmost likely to benefit from them.

The fairness of the system should bejudged based on the degree to which it

balances concerns about justice withconcerns about utility.

From the perspective of the surgeonwho transplanted Murnaghan, theseethical principles were less importantthan the principle of beneficence. Hisaim was to do good to the sick childwho had entrusted him with her care.Other doctors, with other patients whoneeded lung transplants, would havesimilar claims to act on their patients’behalf. Other patients who could havereceived those lungs and had the sameright to treatment of Sarah Murnaghan,did not get a transplant.

The tension is between the needs of thepatient seen in his or her individualityand the commitment of the surgeon tohis or her patients on one side and theneed of all other patients in the sameconditions and their right to receivetreatment.

Organallocationpolicieshave the role ofstriking a balance between these needsand resolve the existing tension. Theywere created with the goal of allocatingorgans justly. In a situation of direscarcity, just allocationmechanismswillinevitably seem unfair to some.

The judge who ruled in favor ofMurnaghan thought he did justice to achild with a terminal disease. But byhis overruling of the carefully designedUNOSpolicies,hedidan injusticetootherpatients who, according to existingpolicies, had a right to the organs thatwere given toSarah. Althoughwerejoiceabout the return to health of a youngchild, we cannot say that justice wasdone in this case. Judge Baylson shouldnot have overturned UNOS policy.

OUTCOME OF THE CASE

On June 12, 2013, Sarah was trans-planted with a set of partial lungsfrom an adult cadaveric donor. Sheimmediately developed primary graftdysfunction and that evening wasplaced on veno-arterial extracorpo-real membrane oxygenation and

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relisted. She received a second lobartransplant from an adult donor 3 dayslater. These lungs were infected withpneumonia at the time of the donor’sdeath, but the infected tissue wasremoved before transplantation.25

Sarah continued to have many chal-lenges, including a respiratory infec-tion, a tracheostomy, and surgery onher diaphragm, before she was dis-charged from the hospital on a ventila-tor on August 27. She is, apparently, stilldoing well at home.

Comments of John D. Lantos

Organ allocation is one of a few situationsin American medicine today in whichthere is a dire scarcity of resources. Needfar outstrips supply. This has been the

case with organ replacement technologysince the earliest days of renal dialysiswhenagroup,nicknamedthe“GodSquad,”decided who should have access to thevery few dialysis machines in Seattle.26

Calabresi and Bobbitt27 defined “tragicchoices” as those situations in whichexplicit allocation decisions must bemade about who shall die. They definea number of different ways inwhich suchallocation decisions may be made: mar-ket mechanisms, queues, lotteries, ac-countable political processes, and thelike. But their conclusion is that none ofthese is ideal, all have recognizableproblems, and that when the problemsof one allocation system become toounbearable, we shift to another thatseems fairer, only to eventually tire of the

new one for foreseeable reasons. TheLAS replaced a system in which organswere allocated based only on the amountof time that a patient was on the waitinglist. It was, essentially, a queue. The LASattempted to improve the fairness of thatsystem by considering illness severityand prognosis. For a while, that seemedfairer. The Murnaghan case highlightsthe ways in which the LAS might treatchildren unfairly. It should lead toa careful reassessment of the mecha-nismsbywhich lungs for transplantationare allocated. It is not fair to allocatelungs based on age, race, or gender. It isfair to allocate lungs based on progno-sis. Age does not appear to be associatedwith prognosis.28 Thus, children shouldhave the same chances of getting a lungtransplant as adults.

REFERENCES

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2. OPTN: Organ Procurement and Trans-plantation Network. Available at: http://optn.transplant.hrsa.gov/policiesAndBylaws/nota.asp. Accessed December 11, 2013

3. Organ Procurement and TransplantationNetwork (OPTN) Policies. Policy 10: Allocationof Lungs. Available at: http://optn.transplant.hrsa.gov/ContentDocuments/OPTN_Policies_PC_08-2013.pdf#nameddest=Policy10. AccessedDecember 11, 2013

4. Keating DT, Marasco SF, Negri J, et al. Long-term outcomes of cadaveric lobar lungtransplantation: helping to maximize re-sources. J Heart Lung Transplant. 2010;29(4):439–444

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8. Norman B. Kathleen Sebelius at center ofstorm over child’s lung transplant. Availableat: www.politico.com/story/2013/06/kathleen-sebelius-childs-lung-transplant-92237.html#ixzz-2nBmx8sVb. Accessed December 11, 2013

9. Baylson MM. United States District Court.Eastern District of Pennsylvania. Janet andFranicis Murnaghan v. United States Depart-ment of Health and Human Services. Rep. no.Civil Action 13-3083. June 2013. Available at:www.paed.uscourts.gov/documents/opinions/13D0484P.pdf. Accessed December 11, 2013

10. United Network of Organ Sharing. Ques-tions and answers for transplant candi-dates about lung allocation policy. 2010.Available at: www.unos.org/docs/Lung_Pa-tient.pdf. Accessed April 21, 2014

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ETHICS ROUNDS

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28. Snyder JJ, Salkowski N, Skeans M, et al.The equitable allocation of deceased donorlungs for transplant in children in theUnited States. Am J Transplant. 2014;14(1):178–183

COLLEGE EDUCATIONS PAY OFF: As a student, I am constantly reminded of thehigh cost associated with obtaining a medical degree. I am not alone. For severalyears, the cost and value of college and professional degrees have been the topicof intense debate. The rising costs of a college education often deter manyprospective students unsure whether a college education is really worth theinvestment. While the concern over cost is well-founded, a new study completedby the Pew Research Center should put some minds at ease.As reported by National Public Radio (Around the Nation: February 11, 2014), theCenter usednationally representative data fromboth a survey of young adults andthe Current Population Survey (a monthly U.S. Census Bureau study of multiplegenerations) in order to assess attitudes regarding higher education and thefinancial impact of earning a college degree. Study findings indicated that thosewith a college degree now make about $17,500 dollars per year in income morethan those who do not have a college degree. This increase in income is a part ofawideningwagegapparticularlybetween thosewith the lowestandhighest levelsof education. Unskilled jobs or those not requiring a college education pay poorly.And, while educational debt can cause mental burdens in addition to financialconcerns, 83% of bachelor’s degree holders believed their degrees to bea worthwhile investment. So, when the thought of the dollars associated with aneducation keeps students and their families up at night, it is important to re-member the future financial and intellectual payoff.

Noted by Leah H. Carr, BS, MS-IV

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DOI: 10.1542/peds.2013-4189; originally published online June 2, 2014; 2014;134;155Pediatrics

Jennifer deSante, Arthur Caplan, Benjamin Hippen, Giulano Testa and John D. LantosWas Sarah Murnaghan Treated Justly?

  

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